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NEW Oncotype Dx Roll Call Thread

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  • samiam40
    samiam40 Member Posts: 93
    edited June 2009
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    Everyone should have been updated now.  Thank you for your patience.

  • kamico3
    kamico3 Member Posts: 16
    edited June 2009
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    Samiam40, I was 55 at diagnosis (oncotype score of 19) I'm already listed in the roll call but my age isn't.

  • marlenet
    marlenet Member Posts: 114
    edited June 2009
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    samiam40 ~Correction

    i was 44 when dx,  One week before my 45th b-day.

  • Seabee
    Seabee Member Posts: 38
    edited June 2009
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    This thread temporarily disappeared after the board crashed. I am bumping it up so that those who want to use it or were looking for it can find it again.

  • aprilgirl1
    aprilgirl1 Member Posts: 773
    edited June 2009
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    bump again

  • don23
    don23 Member Posts: 213
    edited July 2009
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    Age 51 - oncotype score of 11 with recurrence rate of 7%. BLM w/TE, SNB, TMXF

  • adenacb
    adenacb Member Posts: 6
    edited July 2009
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    15 score = 10%

    LMP, SNB, RADS, TMXF plus Triptorelin (clinical trial)

  • mak
    mak Member Posts: 4
    edited July 2009
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    Hello,

    I am new to all of this and trying to make a chemo decision.  My oncologist basically told me to flip a coin or join a clinical trial and they would do so.  Oncotype 25 (16%)  lumpectomy, hysterectomy on 6/25/09  node neg, er+ pr+, her2-, stage 1, grade 2, IDC 1.8cm.  I will take AI and am 48 yrs old.  I am also trying to decide on type of radiation. Any advice would be greatly appreciated!

  • adenacb
    adenacb Member Posts: 6
    edited July 2009
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    Hi, mak:

    We have very similar profiles (and are the same age!), altho your oncotype came up higher than mine. Why did you decide to have a hysterectomy? Just wondering.  So you could take AIs?

     It's a hard decision. I think many in your position would go ahead with the chemo, altho if you look at the chart (above) there are some who chose not to. It's true, if you do the TailoRx study, the study will decide for you. 

    I'm not sure what you mean about type of radiation. There are types? I was just offered 25 sessions plus 5 boosts - there were no options that I know of.

    Wishing you the best.

  • marlenet
    marlenet Member Posts: 114
    edited July 2009
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    Hi mak

     I had a  Oncotype score of 25 (16%)  node neg, er+ pr+, her2-, stage 1, grade 2, IDC 0.6cm.  I had a  lumpectomy, chemo 4xT&C and 33 rads (28 plus 5 boost)  I decided to have Chemo  because ,for me I wanted to do everything to make sure i stay cancer free.  My onc told me because of my age ( 44 at the time)  it maigh be a good idea but it was my decision.     I know this is no help, sorry.   Good luck.   

  • mak
    mak Member Posts: 4
    edited July 2009
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    Two choices of radiation were offered.  Traditional -  about 6 weeks or Canadian Short course - about 3 weeks. 

  • everlastpink
    everlastpink Member Posts: 3
    edited July 2009
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    Hi there,

    Thanks again for taking this on. My score is already listed (18 with 11%) but since I reported the score, I now have had an BSO (tubes and ovaries removed) and I am on Arimidex.  Also, I am 46, if you are adding ages.

  • Seabee
    Seabee Member Posts: 38
    edited July 2009
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    mak--The theory behind traditional radiation is that small doses given, over a longer period of time are least harmful and most effective.  I've seen several articles on the short course, whose advocaates claim it is equally effective and faster. It is being used in Canada and the UK mostly for practical reasons, since they have a chronic shortage of equipmment. So far in the US it has mostly been offered to younger patients with very early stage tumors.

    I followed my radiation oncologist's recommendation of the traditional course for no particular reason except that I wasn't in a hurry (some people are) and that the rad onc came highly recommended.

    If you decide to do chemo, I'd stay away from any treatment involving Adriamycin. There are a number of regimens which have less serious side effects.

  • MBCR
    MBCR Member Posts: 51
    edited July 2009
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    Mak:  I had the shortened course of radiation. I had 21 treatments w/ higher radons vs 36. It was nice getting it done in a shorter time being it is a daily commitment, Good luck

  • Dawnbelle
    Dawnbelle Member Posts: 130
    edited July 2009
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    Hi, everyone.

    I am 43.

    My oncodx score was 6 with 5%.

    I had a 1.7c & a 7mm 90%ER 80%PR pos. tumors. 0/3 nodes.

    I have not seen my oncologist yet, meet with her Monday for the first time, had to have surgery last Tuesday for some necrosis, so I will update SamIam through PM, what treatment she suggests.

    This thread is a good thing, thanks, SamIam, for taking so much time to maintain it & update it.

    I, for one have appreciated having the thread to help decide what I should do, compared to what other girls with like Dx, are doing. Again, thank you.

    edited to add my treatment, I had a left mx & my oncologist says Tamoxifen for five years. OR a trial that includes medical or surgical ooph with Tamox or an AI.

    Still haven't decided on treatment after Mx.

  • Ramona
    Ramona Member Posts: 1
    edited July 2009
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    my score was 19 just over the low. I was node neg, est+  pro- her- surounding tissue also neg

    I had a bilateral mastectomy 5 weeks ago.I am thinking of just the hormane therapy. It would only change the rec from 12 to 8. My Dr says its my decision. I am 60. My cancer was lobular.

    Thanks Mona

  • Newbie21
    Newbie21 Member Posts: 10
    edited July 2009
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    Hi all,

    Do they do this Oncotype in Cda? In Mtl? It is common or do you need to ask for it?

    Thanks,

    Giulia

  • HelenaJ
    HelenaJ Member Posts: 304
    edited July 2009
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    Samiam, thank you for doing this thread:

    Age at dx 46 - Onco score 6 with 5%.  Tumor 1.7mm, ER+ & PR+, HER-, 0/2 nodes (but a few isolated tumour cells), invasive papillary carcinoma, LMP, BLM & R, SNB, TMXF.

  • Seabee
    Seabee Member Posts: 38
    edited July 2009
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    Newbie21--according to some Canadian posters, it is not available in Canada.  You can do it, but it takes too long to get the results, since the lab is busy and US patients get priority.

    Some oncologists make a point of doing it in all appropriate cases.  Others leave it to the patient to take the initiative.

  • kimby
    kimby Member Posts: 14
    edited July 2009
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    My Oncotype score was 16 with 10% rec. Opted for chemo T/C x 4. Start this week. LMP, SNB.

  • vlday
    vlday Member Posts: 2
    edited July 2009
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    Great page!  Thanks for making this happen.  I am patiently waiting for my results to come in, so I am keeping my eyes, fingers and toes crossed for low scores.  If not, so be it, I'll suck it up and go through the chemo.  I'll post results once I get them.  Wish me luck!!Smile
  • sandy2009
    sandy2009 Member Posts: 29
    edited July 2009
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    Vlday - good luck and great attitude!   Hoping for a low score. Smile

    Sandy

  • sandy2009
    sandy2009 Member Posts: 29
    edited July 2009
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    Hi Mona

    Good luck with your decision.. my onco score was 14, no node involvement so opted not to do chemo.   I'm 50, just had my ovaries/tubes out and just started taking Arimidex and doing Zometa.   My tumor was larger so my decision was harder, mine was also lobular.

    Sandy

  • aug242007
    aug242007 Member Posts: 186
    edited July 2009
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    To everyone:

    Anyone know when the TailorX study ends?  We will then have much more information on the Oncotype test and recurrence rates.  I hope that those who have recurrence and mets will come back and post on this thread.

  • Lindissima
    Lindissima Member Posts: 37
    edited July 2009
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    My oncotype score was 13 with a recurrence rate of 9%, 60 years old at diagnosis.  I chose to forgo chemo and started on Arimedex.

    Two well-respected oncologists, one at an NCI teaching hospital, advised me that I would get little to no benefit from chemo. They both said I would get more protection from the Arimedex. After much agonizing, I opted out of chemo. Both suggested Zometa and my onc got  my insurance to approve twice yearly infusions of Zometa, which I have started.  No SE"s so far.

    I wish I had found this board when I was making my decision!  Good luck to all.

  • jen242
    jen242 Member Posts: 1
    edited July 2009
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    Hi,

     I'm new to this forum and website, but I'd be very grateful for any feedback/ advice. I just got my Oncotype DX result and it is 14, and now I am agonizing whether to do chemotherapy. My med oncologist is recommending it because of my age. I am 35. Since I am new here, I haven't figured out how to write my stats in the footer like everyone else, so here's what a rundown of my pathology report: invasive ductal carcinoma, 1.1 cm, Stage 1, grade 2. I did a sentinel lymph node biopsy-- 0/2 nodes (they were clean), and ER+/PR+, HER2-.

  • cw89134
    cw89134 Member Posts: 62
    edited July 2009
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    Lindissima,

    I read on the Zometa website that it was for use in metastatic cases. Here is the link:

    http://www.us.zometa.com/info/cancer_bones/breast_cancer.jsp

    I was wondering if yours was such a case or if your onc is using it in a so called "off label" mode. I'm interested because I'm seeing my onc in a month and would like to ask him if it's appropriate for me. My case is not metastatic (at least not that I'm aware). I had a full body CT/PET scan when I was first diagnosed and nothing showed, other than the malignancy in my left breast.

    Thanks, in advance, for your reply.

  • RainbowConnection
    RainbowConnection Member Posts: 5
    edited July 2009
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    I was 42 when I was diagnosed with 1st stage BC. Initially they told me that I only need a lumpectmy and radiation but then my oncotypeDX score came back at 28 with 18% recurrence so I'm now in chemo.

  • yasminv1
    yasminv1 Member Posts: 33
    edited July 2009
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    I am patiently waiting for my oncotype results. My doc thinks it will come back low risk but who knows. I have been the exception to all tests so far. I am so glad this test exists. My onc said 5 years ago due to my age (31 yrs old) they would have just given me chemo..no questions asked. If it comes back intermediate and up with no doubts I will have chemo. If it is low risk I will do a happy dance, take my tamoxifen and go live a long fulfilling life. Smile I hope to have results when I see my onc on Wednesday.
  • Lindissima
    Lindissima Member Posts: 37
    edited July 2009
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    Hi Carol,

    My onclogist prescribed the Zometa off-label because I don't have metastatic disease (that I know of either!)  Both he and  the other oncs at his teaching hospital are enthusiastic about Zometa to prevent recurrence and strengthen bones in early stage BC patients.  My onc had to appeal to the insurance company several times to get the Zometa approved.  He was delighted when they finally did. 

    I am taking Zometa twice a year, according to the results of the  Austrian trial recently reported on at ASCO.  After my first infusion, I had no SE's.  There is a chance of getting osteonecrosis of the jaw, which is said to be rare but very nasty.  Since   I opted not to do chemo based on my Oncotype score,  I decided to take a chance on the Zometa.  I spoke with my dentist and will be monitotred very closely.

    I am 61 years old and had a bone density scan which came out negative for osteopenia, so I was surprised when my insurance finally approved the Zometa.

    There are other threads on this topic: "Zometa, Anyone?" and "Bisphophonate Trial Roll Call." This trial randomizes people into three groups: Zometa and two pill forms of the medication.  I am not in the trial, however.

    I hope this answers your question!  Good luck with your oncologist next month.

    Linda